When Treatment Fails: How medicine cares for dying children

David J. Bearison

Abstract

Over 50,000 children die of medical causes each year in the U.S., and 85% of them do so in hospitals. While great strides have been made in palliative care, many of these children still suffer considerably in the last months of life. Studies have found that pediatricians, who often do not expect to confront death on a frequent basis, and other hospital staff typically feel inadequately trained to manage the situation and are emotionally unprepared for the death. All of the feelings associated with caring for a chronically ill child – guilt, anger, frustration, ambivalence, exhaustion – are mag ... More

Over 50,000 children die of medical causes each year in the U.S., and 85% of them do so in hospitals. While great strides have been made in palliative care, many of these children still suffer considerably in the last months of life. Studies have found that pediatricians, who often do not expect to confront death on a frequent basis, and other hospital staff typically feel inadequately trained to manage the situation and are emotionally unprepared for the death. All of the feelings associated with caring for a chronically ill child – guilt, anger, frustration, ambivalence, exhaustion – are magnified when a child's life can no longer be prolonged. This book is based directly on the voices of those who care for children at the end of their lives: the doctors, nurses, social workers, pastoral counselors, and psychologists. Centered on seven cases, the author has elicited and recorded the stories of these professionals about their experiences of caring for patients. The narratives illustrate how clinicians from different professional roles speak about the biological, psychological, spiritual, and social dimensions of caring for terminally ill patients. The author analyzes their ways of making sense of and giving meaning to their difficult experiences, unearthing common and distinct themes and issues across disciplines.

End Matter

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